The Walk & Roll to Cure FSHD is the only national event focused solely on funding progress for FSHD. Led entirely by dedicated volunteers, supported by staff, events take place all over the US and Canada.
Since it began with just a handful of events in 2018, the Walk & Roll has been a life-changing event. It has united families, friends, neighbors, and local businesses to forge powerful connections and strengthen our families and our community.
Volunteer leaders from coast to coast are back, stronger than ever, coordinating the largest Walk & Roll effort to date. Whether you join us in person at one of our live events or plan to Walk & Roll virtually, all roads come together through powerful online tools and an international livestream celebration happening on September 18th.
We hope you are already participating, but if you still have questions, we have answers…
Where do donations from the Walk & Roll to Cure FSHD go?
When you join the Walk & Roll to Cure FSHD, donations large and small combine to make a tremendous difference. The FSHD Society earned eleven consecutive 4-star awards from Charity Navigator, placing us among the highest-performing U.S. charities. We believe that the best way to serve the FSHD community is to accelerate promising research and foster an environment for scientific collaboration. Together, we have raised more than a $1.2 million for research and patient support through the Walk & Roll effort. We hope to add more than a half million to that total through this year’s campaign.
Planning for and participating in an event like this during a pandemic can be tricky. But there are some things in place to make this year’s Walk & Roll a truly special one…
Online Participant & Team Center
Everyone who registers for the Walk & Roll automatically receives a Personal Fundraising Page. When you register as a team captain, you also get a team page. Customize yours with a personal photo and story, upload or link to a video, manage donations, set up a Facebook fundraiser that will link all donations received there to your page, thank donors, send emails to teammates, and more.
Facebook makes it easy. Through your participant center you can connect to your Facebook page ensuring all funds raised through the platform properly credit to your campaign. We even have a super-short, super-easy video showing you how, in our Walk & Roll playlist on YouTube: youtube.com/c/FSHDSociety/playlists
You can even set it up to get text alerts, send thank you texts, and more when you connect your participant center to your cell number. It makes fundraising on the go super-simple.
Knowing you are investing in making a difference for all those impacted by FSHD is the biggest reward but Walk & Roll participants who go the extra mile with their fundraising also qualify for special prizes.
All participants who raise $100 or more will receive a commemorative Walk & Roll event t-shirt. Shirts will be available for pick-up on event day.
Additional prizes are available to those raising $250 or more. Prizes are based on a person’s individual fundraising total by the prize deadline. Donations can be received up to 2 weeks after the event to meet the fundraising prize deadline.
International Celebration Livestream with FSHD Radio
Our FSHD Radio podcast host, Tim Hollenback, will hold a 4-hour, coast to coast, Walk & Roll celebration livestream. Walkers and Rollers will check in live from Florida, to Canada, to California – and all points in between. We will recognize teams and top fundraisers, share personal stories, and come together, one voice that is thousands strong, to say, “FSHD does not get the final word; we will keep walking and rolling until a cure is found!”
Team Captains, You Are Our Heroes
Team captains put in a lot of extra time and effort to rally their family and friends for FSHD and we want to celebrate and support that. That’s why we’ve created a Superhero Success Kit for team captains… to help your teams achieve even greater success and have even more fun! Every Team captain that recruits 3 or more people to their team – 4 or more registered members – will receive their very own Team Captain Hero Kit in the mail, full of all the below resources, plus a bounty of festive supplies to make your event day loads of fun!
How long are Walk & Roll routes? Are they Accessible?
Walk & Roll routes are fully accessible, offering a one-mile route; some also offer a longer route near 3 miles. Please contact your local Walk & Roll Leader for specifics on your event location. Walk & Roll routes are accessible for scooters and wheelchairs, by walker, or with a cane. There will also be accessible restrooms at each site.
Together we will catalyze a global movement to shorten the drug development timeline.
Together we can ensure no one on this journey travels alone.
Together we bring help and hope to patients worldwide as we build a global patient community that is informed, empowered, and engaged.
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